I was told my baby may have trisomy 21: Advice?

I did the Panorama Blood screen at 13 weeks; it came back high risk for trisomy 21 (9/10). Has anyone else had this done, and the baby, in fact, did have trisomy 21? Background I’m 28 and now 26 weeks pregnant. Thank you!!

13 Likes

I didn’t have the Panorama but my son has DS. You may be scared now but it will be okay if your baby does have it. My son is the best thing to ever happen to me. You can get a better answer to your question by joining a DS mom’s group. I like Down Syndrome, Support for Mommies the best. Search it on FB.

4 Likes

They can check in an ultrasound for signs of Down syndrome. It should have been done at your 20 week anatomy scan. If they said your scan was normal then I would think the chances of your baby actually having Down syndrome are much lower.

1 Like

The other side of this is with my son he was high risk for DS, had extra scans etc but once he was born he was born without DS but my next pregnancy with my daughter, hers came back low risk and she does actually in fact have DS.

All I can say is I know you will be scared, but honestly my daughter is the most amazing little girl and the best thing that happened to me :blush: there is a lot of support out there, I hope you find the answers you are looking for and I wish you all the best x

5 Likes

No matter what, everything will be okay mama. I know the unknown is scary!

3 Likes

I was told my son had down syndrome and he was born completely fine and is 26 years old now…

My cousin also had that test and was told the same. She panicked her whole pregnancy! Did research and all that and he was born perfectly fine! I have been told by even my doc those tests are not 100% accurate. I refused it with mine bc I knw I’m a worry wart and I was not about to stress my whole pregnancy for nothing! Stay positive, there is a very good chance everything is completely normal!

My son tested positive as well. Did they not immidiatly run the test again? They told me there are alot of false positives.

I never took one because I knew I would keep the baby regardless. I didn’t want the added stress during pregnancy. I was told during my 3rd pregnancy based on ultrasound my daughter had a “smaller than normal head and wider than normal neck that was indicative of DS”. She was born 3 weeks early, and is perfectly fine 14 years later.

Don’t over think. Prepare, but don’t get overly worked up until you know for sure. I know easier said than done.

19 Likes

People that say they didn’t have the test because they wouldn’t do anything different… my friend was the reason I did do testing. Her son had spina bifida and they told her that since they knew ahead of time, they did a c section to prevent stress from the birth canal. That’s why I did the testing, so my babies could be delivered the safest way possible for their condition. :two_hearts::heart:

15 Likes

My son has Down syndrome and was a prenatal diagnosis. There are lots of support groups on FB that have been super helpful for me. Or if you prefer, message me directly if you prefer a smaller audience. My son just turned 3. :purple_heart:

26 Likes

I have a 1st cousin who has Down syndrome, he is a 10 months older than my brother. When my mom was pregnant they had her get the test done due to having. A close relative having Down syndrome, so she had the test done they told her it showed my brother had Down syndrome as well. Along with not being a certain gender. He was born with no abnormalities.

4 Likes

I’ve never had any of the genetic testing. I was told with my last son that he did have markers for downs from my ultrasound but he came out without it. He did have other birth defects, but one corrected itself and he had surgery for the other at 3 days old

1 Like

Precious… They are true gifts from God. My son will be 15 next year and he has Down Syndrome and I wouldn’t change anything about him. He has made me a better person and for that I’m forever grateful

4 Likes

While not a personal experience, I’ve known a few people to have the same thing show in their test and the baby was born without it :thinking: I declined the test because it didn’t matter to me regardless and I didn’t want to hear them suggest to terminate the pregnancy for a “it could have a problem” like the other people I know had happen

10 Likes

My son is Trisomy 21, he is wonderful, however I understand that we are lucky he had almost 0 health issues and is “high functioning”.
As with everything, there is a spectrum. Do research and do what you feel is best.

I never took this test because it didn’t matter to me! I have heard horror stories about it coming back positive and actually being negative when the baby is actually born!

7 Likes

With my 1st born i was told he would have it. He in fact did not have it but was born with agenesis of the corpus callosum. (Brain defect) and that he would most likely be in a vegetative state. Thankful to God you can’t even tell my son has anything. Does have a learning delay but nothing else. Smart and loving kid. Have faith. Prayers

3 Likes

I had the rest done and we were high risk t13 and t18. The most severe of the trisomies. We went for 4d scans and carried on the pregnancy. The only marker baby had showing was her heart wasnt formed right. We said it was in babies hands and carried on until I was induced at 39 weeks. She arrived after one hell of a labour and a stay in hospital regarding her heart issues. We got genetics results back 4 weeks ago. Shes all clear :heart: we were exceptionally high risk like 3 in 10 chance and she came out and defied all the odds x we are just preparing for open heart surgery once she’s a bit bigger. Don’t loose hope mamma. I know exactly how you fe except t21 gets a lot more support than t13 or t18. Just stick by what you feel is right don’t let anyone bully you into doing anything you don’t want too and also you don’t have to have the amniocentesis done early on it can be don’t right at the end of pregnancy. I spoke to my very first midwife when we got our high results back and she said something that stuck with me. Will the results of the amnio make any difference to if you carry on with the pregnancy or not, if not then why risk the chance of miscarriage by having the amnio done. We actually didn’t have the amnio done at all until baby was born. Good luck :four_leaf_clover::heart:

My test was opposite…tested low risk for Down Syndrome and when my daughter was born she did actually have Down Syndrome! It was a shock but honestly couldn’t have done anything different! My daughter is about to be 15 and with many bumps in the road she is a healthy and happy girl!

16 Likes

I know someone whose doctor did the bloodwork and said with 100% certainty their LO would have downs. Guess what- he doesn’t! I always looked at it as you get what you get and a baby is a blessing so we turned down all genetic testing for both my daughter (now 17 months) and my second daughter due in November. I only had myself tested for the cystic fibrosis gene because I felt it was important to know before delivery so that they could be prepared for the extra meds and breathing treatments that would be required but thankfully I’m negative for the gene so we didn’t need to go further than that. Either way (if your test was accurate or not) good luck, and find a good support group before delivery.

4 Likes

They should be able to tell during your anatomy scan. I did the genetic testing with my first, but opted out with my second and they did extra measurements (I think the folds of the neck?) to see if she had it.

I took the test because it mattered to me. But now that she’s here i realize there are things that could happen in their lives that are much worse than down, autism, anything. Just gotta love em the way they are from the beginning

Your OBGYN should be sending you out to a specialist,(Perinatologist) where you can have a more evasive test called an amniocentesis to confirm.

If it’s the panorama test it’s over 99% accurate. They actually extract fetal genetic material from the mothers blood. There are other blood tests that will just screen mom but panorama screens baby.

1 Like

I’ve known more than a few people who were told this and pressured to abort… but when the baby was born, lo and behold, the baby was perfectly normal…

1 Like

That is such SCARY news to hear because my youngest, they said was diagnosed ( when I was till pregnant with her) with trisomy 18 which was DEVESTATING, because they said she would come out deformed and probly wouldn’t make it through the first night, so they had a meeting with me and her dad and said I need to make a decision to either go ahead and have her and take the risk of not making it or to have an abortion, mind you I was 4 months pregnant with her!! Ultimately we chose to have her and they scheduled a amneio because the said that that would have a definite answer, so we did the amnio and they said she looked fine and that the test probly had false positive, but going through the counseling about having an abortion was almost tramatizing, at the end she came out as a healthy baby girl with NOTHING wrong with her, and I’ve always been UPSET that they would jump the gun, what if I eneded up having an abortion,!!! I would have lost my baby girl over the doctors jumping the gun, so PLEASE PLEASE follow up on ANYTHING because these tests and what the doctors say can and are can be alot of bull, I wish you luck and I know how you feel, oh, and I had 5o see a specialist and get ultrasounds done EVERY 2 WEEKS of my pregnancy, so DONT give up and ALWAYS get second, third and fourth opinions if you have to

I tested positive for this in 1rst test. Repeated twice and it was negative

1 Like

By the way, as an advocate and a mother of a child born with Down Syndrome, a sad emoji is not only inappropriate, it is inaccurate. The proper way to address a mother who has received this news is: Congratulations on your pregnancy! I am here to support you if you happen to need anything.
Just like any other pregnancy. A mother is a mother and a baby is a baby.
#advocatelikeamother

26 Likes

U can get a 3d anomaly scan done private in Ireland and uk that will tell you if there is anything wrong it’s not that expensive and it would be worth it to put ur mind at rest

1 Like

What did the nuchal translucency look like on US? That’s a better indicator than blood test.

1 Like

Isn’t that down syndrome…pretty sure that’s down syndrome honey.

What is trilogy 21 I’ve never heard of it before.

That’s your baby love and care always for him or her nothing else matter #LoveWins :heart:

1 Like

Kelly A Price isn’t this what they scared you with when you were pregnant both times?

Love the baby regardless!!

My son was born with Trisomy 21. We had a prenatal positive blood test at 16 weeks. The only way to know 100% is to have an amnio, which is your choice. We declined. As a poster suggested above, there are support groups on fb who were invaluable to me before and after he was born. I can tell you that I wouldn’t change a thing about my little guy. He is pure sunshine. We have had our struggles, but I couldn’t imagine a life without him. Message me any time if you have any questions!

11 Likes

Trisomy 21 just means they have Down syndrome. Realize those tests are super faulty and it’s possible that baby could be born without. Even if it’s the case just go with the flow and love that baby the best way you know how

11 Likes

Heather Moss Browning can you give this mother to be any advice .

1 Like

My sister in-law had it done test same thing but did another test and baby was fine. I chose not to any of my 4 boys test because I’d love and take care of it regardless but each their own.

2 Likes

I was told my son might have trisomy 18 so they did a 4d ultra sound and found out he didn’t have it. The blood tests just imply that it could be and needs looked into. No matter what your baby, with or without trisomy 21, will be beautiful and a blessing!! Head up mama.

Have you had baby looked at for any other signs? Shorter umbilical cord, extra fluid on the neck, missing or small nose bone. There is things they can look for in ultrasound. My 6yr old has down syndrome & im currently 33 weeks pregnant with 2nd child. With this baby I have saw a genetics dr that does ultrasounds to look for signs of down syndrome. My test came back low risk but there is always a small chance the test are wrong.

They told me with my son, had the 4d scan found that he also had short nose bone was stressed about it. He was fine when he was born. Your age sometimes also influence it. The older you are the higher your count is sometimes.

The older you are the higher your score. I had my last at 38, so I skipped their formula and had ultrasounds done. My baby has no genetic issues.

You can try the Harmony test which will give you 99.9% accuracy compared to the normal screening

The test has a high level of false positives. Get further testing.